HELLO EVERYONE! HAPPY EARLY HALLOWEEN!
My name is Angella Falato, and today is my first day on blog spot. (I may refer to myself as Mommy:)) I will mainly use this site to blog about my son Carson Thomas, who at 8 weeks(Now such a BIG BOY at 14 months) was diagnosed with a genetic disease called (CF) Cystic Fibrosis. It's a disease that affects around 30,000 people in the United States, and also sadly is a term that most americans know nothing about.
Before I get into CF (Cystic fibrosis) and it's termonology, here is an introduction to our small, but complete family. Me, ANGELLA, CF MOM, Jordan (CF DADDY) and Carson (CF ANGEL)!Got it? We were blessed to welcome Carson into our family on August 12th, 2008 at Mercy Hospital in Janesville WI! Daddy is from Wisconsin, and Mommy is from Illinois! We were in Janesville visiting family, and setting up our new apartment when Carson decided to arrive early at 37 weeks, forcing us to deliver in WI! What are the odds?
Back to things that matter! Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract.Thus INCREASING lung infections, and DECREASING absoprtion of food.It is one of the most common type of chronic lung disease in children and young adults, and may result in early death.
Because there are more than 1,000 mutations of the CF(Cystic Fibrosis) gene, symptoms differ from person to person.(some are Carson's symptoms, and some are not)! Got it? But in general they include:
Belly pain from severe contipation
Coughing or increased mucus in the sinuses or lungs
Delayed growth
Fatigue
Infants may have salty-tasting skin
No bowel movements in first 24 to 48 hours of life
Stools that are pale or clay colored, foul smelling, or that float
Recurrent respiratory infections such as pneumonia or sinusitis
Weight loss, or failure to gain weight normally in childhood
When Carson was first born (for all you new CF families) everything seemed pretty normal, except the occasional projecticle vomiting! It wasnt until around 2 weeks, when we got the results that Carson had abnormal infant results ( the heel prick they give infants when first born) Iwent to meet with his pediatrician at the time, Dr. Storlie, She sent us to The American Family Children's Hospital in Madison, Wisconsin to have what is known as a sweat test. Children with Cystic Fibrosis often have abnormal amounts of sodium chloride(salt) in their sweat! Carson's numbers came back at 109 (very abnormal) and that was what I call "the first day of the rest of our lives."
It was such a shock to us all! I DIDNT EVEN KNOW WHAT CYSTIC FIBROSIS WAS BEFORE MY SON WAS DIAGNOSED! Dad has the Delta F508 mutation. My mutation is VERY rare, and still cannot be determined(hopefully in the near future more tests can be ran to find the undetermined mutation, as this may open new doors to Carson's doctors in understand his case better).
The care Carson requires is a lot of work but most definitley managable.These routine medications, and therapys are well known and utilized throughout the CF community. Carson requires a much needed dose of salt (which can be put in a glass of milk in the morning to go unnoticed)this is due to his lack of salt transfer between his cells. He gets 1 ml of ABDEK vitamins daily (because his body cannot properly absorb essential nutriets) Carson takes 1 vial inhaled Pulmozyme medication once daily to help thin the mucus in his lung, thus hopefully decreasing lung infections which in turn increases lung function, Thats a plus. In addition Carson inhales 1 vial of Albuterol every 4-6 hours as needed.Thats it for medications!
Now on to some of the therapy used to manage CF. Chest Physio Therapy,aka CPT, aka Airway Clearance Techniques! Phew...Chest Physio Therapy helps break the mucus down in his lungs by "percussion"(cupping and pounding of the hands in sections on the chest cavity, and lung lobes) making it easy to cough out. This helps so in turn bacteria cannot grow in the usually thick and ideal mucus.(Which it really wants to!) and last but most importantly Carson takes 3 Pancrecarb enzyme capsules (in apple sauve) per meal, per snack, per fatty anything!
We as a newely diagnosed family were thrown into such a whirlwind of information, facts, treatment, statistics! If there is one thing I can tell a new parent to a child with Cystic Fibrosis is to LEARN ALL YOU CAN ABOUT THE DISEASE, there is nothing to be ashamed of, other than not being able to properly or effectively take care of your child with this disease.Do'not let your child be a statistic, let your child thrive. Do the treatments, visit the doctors, take precautions BUT LIVE YOUR LIFE! Put this disease first BUT DO NOT LET IT LEAD OR DEFINE YOUR LIFE.Got it?
Enough for today! Thank you to all our family grammy, papa, nana, uncles, aunties, cousins, BOSS everyone who has stood behind us in our battle to keep our little Carson healthy! God Bless.
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I loved it. This is daddy if anyone wanted to know. Can't wait for more from you. I love you and my lil man Carson.
ReplyDeleteOh Angella, bless you for doing this!! I have had a small glimpse into what life is like with a child with CF (being a pediatric nurse) and you are an absolutely amazing mommy to Carson. He's such a beautiful little boy and it broke my heart to hear that he was diagnosed when he was so young. Our family didn't realize that we had the CF gene until I was tested for IVF and I learned I was a carrier. I cannot express how much I respect you and I pray that a cure for CF is found in our lifetime. I know how much you love your son and how you would do anything for him. Starting this blog is a great step in the right direction to educate people about CF. You know if you need anything, I'm here to help. :)
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